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J-Pouch ForumsPouchitis
Stumped
ATXGuyATXGuy
shadoe-d go get you some pro biotics to put the good flora back in your intestinal tract i use align or the walgreen brand of it works great normally [ more ]
ATXGuy Well, the pressure & pain has continued, generally worsening over the course of the day until by bedtime it's pretty severe. Saw the surgeon today after Bloodwork and a stool sample on Tuesday. Tests showed nothing, but a scope showed inflammation at the anastomosis, so he's put me on cortisone suppositories, one per day for a month. Here's hoping this does the trick. For whatever reason, the last couple of days have been pretty great in terms of urgency/frequency, so if these knock out... [ more ]
ATXGuy Well, the doc basically said take Imodium as needed and call if I spike a fever over 100. Things were better today with no Imodium, and pain was less, though still present. Fingers crossed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extremely experienced J-pouch patient- AMA
AD Adam Dirks
shadoe-d if you are near a Cleavland clinic Dr jaun nogueras 954.659.5101is one of the best ..... i had multiple problems with strictures sprung a leak had to be fixed it hasnt been a good thing i tried several years ago to get The Barnett Continent Intestinal Reservoir (BCIR) put in because of the constant accidents but they told me that i didn't have enough intestine to do it . I wish I had been offered more than one type of surgery for this i wouldn't have picked the j pouch he did two of my... [ more ]
ks1905 Adam, Have you changed your diet or added probiotics over the years to your regiment? Any lifestyle changes that you made because of your j-pouch? I'm a j-pouch noobie, my take-down was ~7 months ago. [ more ]
ks1905 Originally Posted by 13 Years & Counting: Yes, it can be done, and yes, it's under sedation. You have to find the correct doctor to do the procedure though. As I said, the first doctor said it couldn't be done, but to me that didn't seem right. I turned to this site for help & found it. I didn't know that it was such an issue, my stricture was towards the top of my pouch and the GI (Dr. Steinlauf) just dilated it while I was under-sedation. He is part of the NY Presbyterian Cornell team. [ more ]
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J-Pouch ForumsGeneral Discussion
Color And Shape Coding Of Medications
CTBarristerCTBarrister
CTBarrister Originally Posted by Scott F: I don't think the manufacturers give a moments thought to this. Pretty thoughtless of them. I can recall back in the 1990s when my Grandfather had early onset Alzheimer's and a few other health ailments and had to take many pills every day. He would forget to take his pills, or confuse one with another. He probably took about 10 pills in all. So we bought him this pill dispenser and each pill was put in its own compartment of about 10 different ones so he would... [ more ]
Scott F I don't think the manufacturers give a moment's thought to this. They do like to give brand-name medications a distinctive appearance, though. [ more ]
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J-Pouch ForumsGeneral Discussion
ABL (Accidental Bowel Leakage)
C CeeeeCeeee
LRB I use the butterfly every night, and it has saved me from having to change the bed linens many times. It feels a little weird at first, but I quickly got used to it. I also sleep with a towel under my midsection to further protect my sheets. It's a lot easier to put a new towel down after an incident than it is to change the sheets in the middle of the night! [ more ]
Jan Dollar I haven't. I think it is marketed to women because they are most likely to suffer with this. This is due to the sphincter damage from pregnancy and childbirth. There is even some sphincter damage if you have a c-section! All that pressure I guess... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Abscess/Fistula-Options besides removal of pouch??
Lisa AnnLisa Ann
SJP3 Easier said than done given how sick you can feel with an abscess, but I'd be patient and get as many opinions as possible before doing anything as drastic as losing your pouch. It took me over 3 years to resolve the issue. I am (trying) to attach a link for Dr Kiran in NYC. If no luck elsewhere you may want to consult with him. http://asp.cumc.columbia.edu/f...118&DepAffil=Surgery [ more ]
BillV Lisa Ann, my thoughts are to make every effort to keep your j-pouch. If it turns out that removal of your pouch is necessary, there are continent ostomy options available, namely the k pouch and the BCIR, that avoid having an external bag and its associated issues. Cleveland Clinic does k pouches and they could provide information on these options. I wish you the best on whatever you decide. Bill [ more ]
Lisa Ann Sorry for not replying sooner. My abscess has flared up again. It seems to be draining. The inscision is still slightly opened so its able to drain some. Thank you both for the information and Jan for posting the link. I'm going to contact The Cleveland Clinic to discuss my issue with a surgeon to see what my options are. I just want the ileostomy to be my last resort if I can avoid it. Its been 7months and three surgeries and I'm just frustrated. Thank you again for the positive feedback. I... [ more ]
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J-Pouch ForumsGeneral Discussion
WARNING......Consideration if buying a tube of Ilex Protectorant Paste
FM Former Member
Former Member http://www.zumaonline.biz What's this...... pay per click ? [ more ]
Yasmine I had a j-pouch for over 13 years and nearly all that time, I had a problem with leakage and skin breakdown. On very bad days, nothing helped the pain and I couldn’t even walk. I tried iLEX and expected it to be just as effective as all the others- meaning not very. I can still remember the first time I applied it. What a liberating feeling! No more excruciating pain! I wasted years not being able to do things before I found iLEX. It has made my life so much happier. http://www.zumaonline.biz [ more ]
Catinthehat I recently ordered more ilex and it came in the toothpaste type tube. Big improvement over old tubes! (in U.S.) [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need some Ilex!
Natisha1971Natisha1971
charlottesometimes Hi, I hope you found an iLex supply. In case you didn't, I buy mine from here: www.ilexhealthproducts.com . I believe if you are in England/ Wales iLex is now available on prescription. [ more ]
ELH Ilex is available again. I had an email stating that I can expect my order to be delivered in 3 days. [ more ]
dawn58 I have used just zinc oxide and it worked great. Also, very cheap and very easy to find. [ more ]
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J-Pouch ForumsGeneral Discussion
Ilex In Short Supply
suebearsuebear
charlottesometimes iLex is now available on prescription in England and Wales. Check out www.ilexhealthproducts.com Such a great product! [ more ]
Natisha1971 Hello, Thank you for the info on the Ilex. This is the only product that my daughter can use. She is now having severe butt burn/breakdown of the skin. Does anyone know where we can purchase Ilex? If anyone has some to sell, I'd be happy to purchase some. Thanks for the help! [ more ]
suebear DRP, I have a tube, only used it once, and will never need it again. If you'd like it, I'll mail it to you. You can PM me your address. Sue [ more ]
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J-Pouch ForumsHelp! Need advice now!
feels like hangover but don't drink
ccpouchoccpoucho
ccpoucho Thanks. I finally figured it out and you are right I was dehydrated. I went back to 1 24 ounce of Gatorade a day along with my smart water. I was drinking 90 ounces of smart water each day but stopped the Gatorade. Thank you both for the response. As soon as I think I have this figured out, something else happens. [ more ]
TE Marie The hangover feeling might be do to partial dehydration or could you have something like Chronic Fatigue or Fibromyalgia? You can never get enough sleep with them. Good Luck [ more ]
Jan Dollar Maybe a virus? Flu? I got something right after the holidays. No fever, some cold symptoms. But what really threw me for a loop was overwhelming fatigue and weakness. Walking up three steps made my knees shake. My thighs felt bruised (but weren't). I wound up with a sinus infection. Now I feel back to my baseline. I am hoping it was just a virus. My primary doc did not think it was flu. A severe case of pouchitis can cause fatigue too. Hopefully the Flagyl works. Jan [ more ]
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J-Pouch ForumsPouchitis
safe abx for pouchitis while pregnant or nursing..?
armywifearmywife
Scott F Cipro and Levaquin are dicey while pregnant, but probably safe while nursing. Augmentin looks better than Cipro during pregnancy, also probably safe while nursing. Best to avoid: Tindamax, Xifaxan, doxycycline The probiotics, like VSL #3 DS, are surely quite safe, so you could maximize the dose and perhaps reduce your antibiotic need. I take 4 packets/day. Similarly, this might be a good time to see if lower carbs in your diet help you. Also, remember that nursing is wonderful, but only if... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis Meds & Probiotics
J JPoucher2014
ks1905 Originally Posted by CTBarrister: Is the thrush worse than the pouchitis? Have you taken nystatin for the thrush? It's really not a "than", it is more of an "in conjunction with". The thrush makes my pouchitis symptoms worse and on top of that it makes me really exhausted almost to the point that I can't function. I tried Nystatin for 10 days cycles a few times and it would always come back after I stopped. I am now on Diflucan continuously while on Flagyl. As soon as I stop the Difucan the... [ more ]
Deanna6 I am now experiencing pouchitis also ( for the first time) and am on Cipro and having the same problem. My pharmacist ( that I love and trust-knows all my issues) told me to not only continue my probiotic but to double up but not take at the time of the cipro. And to also take my multivitamin at a different time as well- couple hours after the cipro. [ more ]
CTBarrister Is the thrush worse than the pouchitis? Have you taken nystatin for the thrush? [ more ]
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J-Pouch ForumsGeneral Discussion
Cyclling, running with J pouch?
S shnwilkins
Former Member ❤️
Handlebar I have been riding on my trainer and on rollers in my basement. I have not ridden out on the road more than 50kms at at time. My take down was in August and there were complications and now in Ontario it has just been too bloody cold to ride outside. I have been trying to get some of my presurgery fitness back. I have the extra complication of not being able to eat sugar. Fruits and vegetables are OK but hydration drinks and gels or bars are not an option. I have tried NUUN tablets and had... [ more ]
JHendrix "Gels" refer to small foil packages of carbohydrate that people carry and eat during endurance sports. They also contain electrolytes and sometimes caffeine. They provide energy during a long cycle, run, etc. (Eg. Gu gels) [ more ]
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J-Pouch ForumsFAP Forum
J Pouch Disconnect
H hadenough
TE Marie I've been considering getting a permanent ileostomy too. I was finally doing well for a few months after I started using 2 packets of VSL#3DS daily. I've been back on antibiotics for around 3 weeks and made an appointment with my GI at Mayo's next week. I've been taking Norco for pain every since my surgeries 4 years ago. Lately I've needed to take the max dose prescribed to me plus have taken a strong dose of ibuprofen too. It was either that or go to the ER tonight. I have chronic cuffitis... [ more ]
Jpouch1064 I am so sorry to hear of your problems with Jpouch. I have had 2 bouts of pouchitis over the years and I can not imagine having to constantly live with it. I wish you the best whatever your decision is. I know you will think this is odd, but when my pouch is out of whack, I drink buttermilk and it helps. If you don't like buttermilk like I first did, you can lightly salt it and dip saltine crackers in it and eat the crackers. I also held my nose and drank it the first time I ever tried it. [ more ]
nocolon-2000 Have you been double-checked for Crohns? When I was having problems with pouchitis, pain, etc., they did the blood test and I am somewhere in the Crohns family now. I take Imuran and a probiotic daily. It's worked pretty well for me for at least twelve years. Do what's best for you. And we will be here to support you. [ more ]
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J-Pouch ForumsGeneral Discussion
Cappuccino and other vices
CatinthehatCatinthehat
skn69 As a K poucher I drink over 2 quarts of coffee a day...1 brewed + a large number of expressos and instant at night...all so that my pouch runs smoothly and without a hitch...they brought me full thermoses 4xs/Day to my hospital room post op pouch creation explaining that it helped to keep things liquid and running. Been 35yrs and I still do it. It works less effectively than in the begining but still does the job. Our pouches are the same (except for the exit) so it should have the same... [ more ]
Catinthehat That's interesting about the coffee, Scott. I'm not really sure how much influence it has on the number of times I have to go, but I don't want to stop to find out. [ more ]
Scott F I haven't managed to persuade myself to abandon most carbohydrates, even though they might be contributing to my antibiotic-dependent pouchitis. Coffee, on the other hand, is something I couldn't tolerate *until* I got my J-pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Rectovaginal fistula
M mel82
mel82 Ok thank you x [ more ]
hattie No colostomy. I have no way of knowing how long the healing internally took, but as far as what was visable to me, about 10 days. However I did feel pretty well very soon afterwards and with just not doing anything too strenuous and just commonsense limitations. However, this was done as out-patient and also everyone's situation is different. Hopefully yours will be relatively easy and uneventual and successful. [ more ]
mel82 Thanks for reply.. How long did it take u to recover after surgery and did u have colostomy while it healed ? [ more ]
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J-Pouch ForumsGeneral Discussion
How to avoid discharge at night?
FM Former Member
Former Member Originally Posted by Scott F: Originally Posted by davadavadava: I mean every time I have to get up at night it is not because the pouch is full, it is just a little itching but I do it anyway since I think it is my body telling me to get up and go. If I wake up in the night, but my pouch doesn't need me to use the toilet, I roll over and go back to sleep. I might check to make sure nothing is amiss, and I do keep washcloths in my nightstand in case there is trouble (generally only when... [ more ]
Annikki I haven't slept through the night in 16 years. The best I can do is 5 hours straight. I get up 2-3 times and according to my Fitbit I lose about 1 hour of sleep a night. I adjust my time to ensure I get 7.5-8 hours a night. [ more ]
Scott F Originally Posted by davadavadava: I mean every time I have to get up at night it is not because the pouch is full, it is just a little itching but I do it anyway since I think it is my body telling me to get up and go. If I wake up in the night, but my pouch doesn't need me to use the toilet, I roll over and go back to sleep. I might check to make sure nothing is amiss, and I do keep washcloths in my nightstand in case there is trouble (generally only when pouchitis is out of control). [ more ]
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J-Pouch ForumsHelp! Need advice now!
dental work two weeks before surgery
K kariA
Jan Dollar Sounds like good news! The canker sore is just more evidence that your colong is causing you grief. Jan [ more ]
kariA thank you Jan, Sharon, Scott and Jaypea, So this morning at 7:30 i got a call from dentist to be there at 8:45. At 8 i called the CR surgeon's office letting them know i have to go to dentist and if there is any antibiotic the surgeon doesnt want me to use. Have not heard from CR yet, i later learned his secretary is off today. Got to dentist. They were all prepared to do root canal but first we took another xray and he (dentist) saw there is not problem around nerves. i also did the ice... [ more ]
Jaypea If you develop a fever or systemic infection then your surgery will be cancelled. You want your body to be in the best condition pre-operatively and that includes dental health. Please see your dentist to,have your tooth fixed quickly. [ more ]
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J-Pouch ForumsGeneral Discussion
Weight
M myndi
Mysticobra I lost 50 and only got 7 back and I eat all the time. Not bragging... Trust me. I only wish I could gain. 175 before and kept my weight there for a very long time even with UC. Now I'm 139 and look like... Well... Terrible. Sorry to hijack your thread but I have the opposite problem and it's just as bad. I get scoped Thursday. Maybe they will see or find what my problem is. Doubt it. [ more ]
Former Member I guess my reply will be somewhat controversial but the best solution to lose weight is to eat less, especially cakes/sugary foods of a high calorie content. Also, not to consume heavy meals or takeaways during the evening or just prior to bed, as during the normal inactivity of an evening and then sleeping for 8 hours, the calories are not being burnt off. It's one of the reason it's recommended not to skip but to eat a hearty breakfast as normal daily activity until lunch provides the... [ more ]
CeeeeCeeee I've always had weight challenges and that didn't change with having a J-pouch! Fortunately, on the one hand, my pouch is food and drink friendly. Anything goes! I did very well on Weight Watchers but didn't stick with it forever. My pouch loves crunchy veggies, etc. so my food choices are wide open. I just don't usually make wise ones! [ more ]
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J-Pouch ForumsGeneral Discussion
Average time to get out and about after takedown?
KeepMovinOnKeepMovinOn
CeeeeCeeee I chose to wait a full year before having my takedown. My actual takedown and adjustment were super easy. I wasn't young, either. I was 63. I was ready to go back to work and resume normal activities two weeks after my takedown. I probably could have done so earlier but my surgeon did not want me to drive. Best wishes! [ more ]
skn69 Depends on your age, your physical condition, how your pouch behaves post op etc... The healthier you are going in the easier things are post op. I know that for a laporoscopic pouch procedure I was down for the count for 3 weeks and then back to working full days...it is a very individual thing. Make no plans just hope for the best. Sharon [ more ]
ATXGuy I had my takedown on 10/27/14 and was on an airplane to celebrate Thanksgiving with my extended family on 11/25. I was still tired and had to take it easy, but was able to be out and about with no issues by then, even after a surgical complication on the takedown that required opening me up a second time, and extended my hospital stay. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery scheduled this week/fissure
R Rylansmom
TE Marie This has got to feel like a never ending dilemma for you. I agree with Jan's advice - seek out a colorectal surgeon. I was cringing when I read about your local doctors. They probably are doing what they think is the best for you but you need specialists now. The thought of an exploratory surgery like this is scary. I know how you are feeling with the pressure/full feelings too. I thought things with my 4 year old pouch were improving until around a month ago. I have been in excruciating... [ more ]
Jan Dollar I'd ask for a consult with a colorectal surgeon and an EUA (examination under anesthesia). Perhaps this is the "surgery" the general surgeon is talking about. But I would not want to give a blanket authorization for anything, sphincterotomy in particular. Jan [ more ]
Rylansmom I am not in as much pain actually passing stool. I just have an extremely full/pressure feeling at all times. I've delt with butt burn if I have ate the wrong things and it has been more difficult to pass stool at those times. Just frustrated, feels like more is going on but don't where to turn or what test to ask for. [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain
U UjohnjC
Jan Dollar I'd give your GI a call first thing Monday morning. If an abscess is brewing, you should not wait until Friday to address it. Needle-knife could be the answer ultimately, but you may need something done right away. Maybe a CT scan to check the status can be done tomorrow. If your pain becomes severe or you spike a high fever, you'll need to go to the emergency room. Jan [ more ]
UjohnjC jan i also been having a lot more discharge from my bottom [ more ]
UjohnjC jan been about a month going to see GI this friday talk about needle knife option? [ more ]
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J-Pouch ForumsK-Pouch Korner
Weight
amosamos
skn69 Amos, Some people use protein powders and artificial food supplements to put on the weight but although I am not against them I prefer the natural route. If you cannot put the weight on naturally and all your bloodwork comes back fine then I might try some good quality protein powders but research it well first. I know nothing about what they put into them anymore so do your homework and pick the most natural ones. I had success with whey powders about 30yrs ago but don't know if they still... [ more ]
amos Thanks Sharon I'll some of what you said and see what happens. [ more ]
skn69 Funny how some of us can't take it off and others can't put it on. I have had surgeries with post op complications that lasted weeks and I only lost 2lbs. Frustrating. Maybe you could up your intake of nuts, dried fruits, root veggies (sweet potatoes, various potatoes etc) and squashes along with more red meats. I don't like suggesting oily foods, white flour or anything unhealthy but I can put on 10lbs on nut butters, bananas and honey. Dark breads and butters and pastas in cream sauces... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Is it worth it?
S S.Knox
Annikki I libe a normal fulfilled life with almost no issues except for occasional night time water leakage. Easy to manage. i have had my pouch for about 17 years. I have been in a relationship for 15 with two successful pregnancies. I travel, exercise, a have regular sex, swim with no issues. [ more ]
LC I think its hard to say. If you are really miserable with your ileostomy, you should go for it especially if you haven't had any signs that you have misdiagnosed Crohn's and you are generally very healthy. I had one for a year before getting my pouch and I hated almost every minute of it. I have very sensitive skin and nothing prevented the adhesives from pulling it off or burning my skin. Combined with fairly frequent leaks, my skin was a mess and I would cry every time I had to change my... [ more ]
AllyKat Ps yes u can always go back but who wants to go thru more surgeries. I had the option of removing it many times but have totally chicken out on the surgical end that's why I still deal with it. [ more ]
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J-Pouch ForumsGeneral Discussion
Pain after bowel movement
B bladen88
bladen88 it seems to be just on the inside of it thank you for the advice so far [ more ]
Jan Dollar If it is on the outside, it is probably local irritation or excoriation from frequent stools, sort of like a bad diaper rash. For that you need a good barrier cream, and you may have a chronic fungal infection too. Baza cream is zinc oxide based and also contains an antifungal. Baby wipes are not good, as they dry the skin and can contain irritants. Plain water is better. A bidet is best for the best cleaning without rubbing the area. Fissures are inside the anal canal. Jan [ more ]
bladen88 It is right around my butthole and its like an itching/inflammation feeling to it and last week there was blood when I was wiping [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post NG-tube pain - help!
J Jets99
Jets99 Thank you for the tips! I am trying them as we speak. Fingers crossed it gets better soon! This is so uncomfortable and painful. [ more ]
TE Marie I don't know the yoga name as well as how I get the gas out. Think of gravity so if you position your head lower than your abdomen the gas will rise up and you will fart. Get on all fours, knees and hands then reach as far as you can in a stretch so your head will be on the floor and your butt will be up. You can also try laying face down on the floor to push the gas from your abdomen out - this one hurts more than the other way. I still put my arm on my abdomen and apply pressure below my... [ more ]
Jan Dollar The problem with pain meds is that they slow the gut, prolonging the time it takes for this gas to work its way through. So, it can be counterproductive. Gas pain can be extremely painful, I know. Try to move around as much as possible and drink clear liquids. Tea is good so is grape juice. Avoid apple juice, as it can contribute more gas. One you start farting, you will feel so much better! Sorry your vacation is being hijacked! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch and blood
T tiffanygoad
bladen88 I just hit hit a year after my surgery and I am in the same boat as you I think I'm going to bring this up to my doctor as well I had blood work done the other day and my white blood count was a little high so I'm starting to think this could be what is going on with me [ more ]
TE Marie We are not supposed to push hard when we go. Easier said than done. You could have internal/external hemorrhoids or you might have cuffitis when causes blood sometimes and it shows on the TP. It also can cause anal irritation/itching/burning. I have chronic cuffitis and if I forget to use my suppositories for a while I am quickly reminded with burning pain and hard to pass BM's as everything is swollen up at the bottom of the pouch due to cuffitis. I really hope you just have hemorrhoids or... [ more ]
Scott F Hemorrhoids would be my first guess. Why do you think internal hemorrhoids? Couldn't they be external? [ more ]
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J-Pouch ForumsGeneral Discussion
just had takedown..gas questions
dgtracydgtracy
bladen88 Lots of walking is the best thing to do if you are eating solids and bowel movement isn't a lot it could be the start of a Blockage as well that's what happened after my takedown from scar tissue ended up have two blockages within 3 weeks [ more ]
Deanna6 Yep, when I was just in In October it was lots of walking for the gas. Get out there and roam those halls! [ more ]
Jan Dollar How do you spell relief? F-A-R-T! You better not have air moving through the walls. That would be be due to a perforation. Walk, walk, walk. Have a party when you fart! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Why am still bloated /distended all the time?
LesaLesa
Lesa Thank you so much Jan for your reply. I'm so thankful for all the info you all have given me. I believe I'll have quite a few things to ask my surgeon when I see him in a week and a half. [ more ]
Jan Dollar Lesa, it looks like you had peritonitis, based on your history. So, you are much more likely to have widespread adhesions (internal scar tissue) than those of us who did not have that complication. I had a minor leak, but it stayed localized and did not require open surgery to deal with it. Unfortunately, if these adhesions are persistently causing trouble, it takes another surgery to release them. More surgery can mean new adhesions, so they only do it as a ladt resort. Unless there is a... [ more ]
Lesa Thank you so much ks1905 and GraceB for your responses. I will definitely ask my surgeon when I see him next month about stricture dilation and scar tissue. [ more ]
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J-Pouch ForumsGeneral Discussion
MASS EMAILS FROM THIS SITE??
PouchomarxPouchomarx
Jan Dollar Good to hear! Jan [ more ]
Pouchomarx no emails in the past 24 hours to report [ more ]
Jan Dollar Please let us know if the bug fix did not work. We need input from you to know what is going on. It still puzzles me about the unlinked addresses. Makes it sound like malware, and that absolutely is not the intent here. Just like with any other email notification program, suspending emails and fixes don't always work immediately if there are emails already queued. jan [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis, Blockage or Gastro Bug?
lclassenlclassen
Spooky Partial blockages and gastrointestinal viruses *can* have some overlapping symptoms, in the sense that both can be associated with cramping, bloating, very watery stools, and/or nausea/vomiting. You could also have a low grade fever with both (though with an obstruction, a fever may point to a more serious case that requires hospital treatment). However, partial blockages are usually distinguishable by sharp, wave-like cramping, whereas a virus usually causes a general "all over" abdominal... [ more ]
Scott F If your *only* symptom is watery stool (i.e. no urgency, pain, frequency, smell, gas issues), then it might well be nothing at all, or at least nothing very important. If so you can address it (based on your preferences) with soluble fiber (e.g. Metamucil) and/or bowel slowers (e.g. Lomotil or Imodium). [ more ]
skn69 Hi Linda, Although I am not an expert I can usually tell the difference between when I have a blockage or a bug...in my case (k pouch) a bug gives me some cramping, nausea and a lot of liquid output but a blockage starts with pain in one specific site, slows my output or even blocks it off completely and I cannot eat anything (I throw up if anything including water goes in). Personally bug means go and blockage means stop. But everyone is different...try to keep a diary when you have one or... [ more ]
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J-Pouch ForumsPouchitis
No Pouchitis, but bad pain cramps & spasms
P PDXDavid
Fixmeup I know I am very late reading this thread, but I was wondering if the pain everyone feels is similar to extremely bad gad pains. I have had many periods of extreme pain, but it almost feels like I have so much gas in me and can't get it out. I can actually feel bulges in my belly and I can feel the gas moving around but can't pass it. Just wondering if I possibly have something going on. Thank you for all the help. [ more ]
Sue2001 Hello Everyone, It has been a while since I wrote, but I am doing a lot better. My internist actually switch one of my medications, Lexapro, to Cymbalta. He said that Cymbalta has a pain receptor in it. This has helped tremendously!! I barely have the pain, cramping and spasms any more. Just maybe a couple or few times a month if I don't eat right or possibly over eat. It has been so nice to feel a bit normal again! Just thought I would share and see if this would help anyone else too. Thank... [ more ]
Scott F Tylenol is only a threat to your liver if you overdose. It's easy to accidentally overdose, though, because it's combined into many over the counter medications, and because the dose in your blood goes up if you combine it with even modest amounts of alcohol. I'd sure take Tylenol over Tramadol if the Tylenol worked adequately. If you already have liver disease, all bets are off. [ more ]
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J-Pouch ForumsGeneral Discussion
1 year with J-pouch and no changes
C coach3443
Former Member Compared to me you're in pretty bad shape Rob. I've had my pouch for over 20 years. It's been nothing but hell but your's sounds even worse. I do believe there's a chance of yours getting better but it's kind of like wishing for a rookie who can't even hit. 200 his first few years to become a .300 hitter. Best thing you can do is stick with safe type of diet such as rice, peanut butter and other starchy type foods. [ more ]
ks1905 Rob, Has your GI or surgeon looked inside your pouch? I had a stricture that needed dilating and it has made a big difference for me. [ more ]
GraceB sometimes it takes longer to start feeling better everyone is different. What type of meds are you on. Hang in there it does get better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis or something else?
C Crystal<3
13 Years & Counting If the medication doesn't help within a few days, or if your symptoms gets worse, call your doctor and ask to be scoped to see if there's any kind of stricture/inflammation and/or blockage. (Like the others have said.) Keep your diet low key for now & be sure to drink lots of liquids. Feel better! [ more ]
rachelraven When I couldn't/can't pass stool and feel like that, it's been related to outlet strictures and/or inflammation. Dilations have helped, and when they don't, steroid tapers at this time have Allowed me to pass things easier. [ more ]
Scott F Different things (including pouchitis) can feel like what you're describing. If the metronidazole (Flagyl) doesn't help in a few days it could either be 1) something other than pouchitis, or 2) pouchitis that needs something other than Flagyl (like Cipro, for example). Pouchitis isn't really an "infection" most of the time, but seems to be helped by rebalancing the bacteria in the pouch with antibiotics. Have you had a pouchoscopy? It can help figure out what's going on, especially if it's... [ more ]
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J-Pouch ForumsGeneral Discussion
Prescription for Opium Tincture in Miami, Fl
M Marifv
ks1905 Tincture of Opium tastes so gross and the taste just lingers. Don't take it without something to mask the flavor. Maybe your GI can recommend a pharmacy or can call one of their patients who takes tincture of opium and see where they get their script filled. [ more ]
ks1905 I live in NY and it took me 8 different pharmacies in NYC before I found one. One of the pharmacists recommend that I look near the major cancer hospital in NYC (Sloan Kettering). And that's where we found it. He also said that none of the major pharmacy chains will carry/supply it. Maybe your insurance company can help you find a pharmacy. Otherwise I'd start calling all the local pharmacies that I could find phone numbers for. [ more ]
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J-Pouch ForumsGeneral Discussion
liver numbers? loperamide?
allswellallswell
Jan Dollar I doubt it. I had the same issue, but loperamide was never a suspect. Liver disease is associated with UC, whether it is active or not or even if you don't have a colon. It can be something minor or quite serious, so it is good it is being checked out. Mine turned out to be nonalcoholic fatty liver disease. My liver enzymes returned to normal after losing some weight and starting biologics to treat my enteropathic arthritis. Since then, I don't take NSAIDs for more than a couple of weeks and... [ more ]
Scott F I don't think loperamide will do anything to the liver within doses on the label. It does need to be used cautiously if the liver is impaired by some other cause. [ more ]
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J-Pouch ForumsPouchitis
Yeast causing infammation
BM boy's mom
ks1905 I've been on Flagyl and Entocort for 3 months now and I kept getting Thrush (yeast infection) which would make me really tired and my symptoms worse. They would treat me with a 7 day course of an anti-fungal and it would come right back. Finally I am on a continuous course of Fluconazole while on antibiotics or steroids. It has made a big difference in improving my symptoms and energy levels. At first the Fluconazole would give me the worst diarrhea but after my body adjusted to it things... [ more ]
Jan Dollar No, sorry about the confusion. I did not have yeast infections with Humira. I was just responding about what the treatment would be. What I was saying was that I needed to take Humira weekly, and even at that higher dose, it eventually lost effectiveness. Since then, I've been on Simponi, and just switched to Cimzia last month. Jan [ more ]
boy's mom Thank you both. Jan - it sounds like you are suggesting humira gave you a yeast infection? Or you were more vulnerable because of the immune suppressing factor of humira? Our GI who only wants to give more humira (not even consider yeast) has not mentioned any link between humira and yeast. I heard nystatin could be a safer drug than difflucan because of difflucan's impact on liver. Do you know why difflucan was always used and not nystatin? Thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
Typical Symptoms after eating/drinking something that doesn't agree with you?
slightly_creativeslightly_creative
Curly ❤️
CeeeeCeeee My symptoms are generally limited to severe butt burn and more frequent need to empty my j-pouch. I almost always know which foods will bring this on and most of the time I choose to indulge rather than to avoid those foods. I know that this, too, shall pass. For me the longest period of discomfort is about one day. I make use of applying a barrier cream liberally during that time. Typically, I don't even use one anymore. My j-pouch is over 10 years old I by now I know it quite well. Hang in... [ more ]
JBC Hi all, when ingesting a food or beverage that does not agree with you the symptoms can vary but may include: gas, bloating, nausea, vomiting, diarrhea, or some combination of these. food allergies may cause hives, itching, somnolence too. to discover which food or beverage it is, it's always recommended you have a food diary. nice to be back here by the mass email mistakenly sent out. had surgery in 2001 (wow) and just came back after a long absence. im a physician assistant and wrote a... [ more ]
See all 3 replies...
J-Pouch ForumsOstomy & Skin
rectum removal stitches
LambiepieLambiepie
LHetti I think they just dissolve, not really fall out. I had a knot that was very uncomfortable that took the longest to dissolve (the nurse could see it and I could feel it) and once that was gone, I was so much better. Again, the 4 week mark was when I really felt better. My bottom probably hurt until about week 5 and my incision still had to have a dressing until week 6. Hang in there! Laura [ more ]
Lambiepie Thanks for the response, Doug. I'm almost done with the first month, so I'm halfway there! [ more ]
Domino300 I don't remember about the stitches, but the butt pain is the worst part of the surgery. The worst part is sitting on a toilet seat which stretches the wound out. It's been 6 years and I still won't sit on one, so I can't imagine how it is for a woman. It took 1-2 months to be comfortable with it in daily life. Doug [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
% who typically have nighttime leakage?
KeepMovinOnKeepMovinOn
Annikki I have had my jpouch for 17 years. I have occasional minor leakage. Artificial sweetners created bad leakage. Too many vegetables especially cabbage or leafy greens at dinner. Leakage never soils my bed and its just usually dampness and not actual waste. [ more ]
Pixie I've had my pouch since 2007 and have never had leakage. I would say go for the takedown [ more ]
crsavukas Had illeo removed 7 years ago. Have had pouch leakage since. I use guards for men which have been me. .very successful for me. Occasionally accidents do happen. Balmex has been my choice for skin irritation. Wore ostomy for 5 months, Had 7 accidents during that period but once I was doing all changes myself, had no accidents. I would think very hard wearing an ostomy vs the J-pouch. Have tried many things, non seemed to have much success. Hang in there. Don't give up. [ more ]
See all 14 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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